Petition For Disclosure Of All Diagnoses At The Time Of Diagnosis

My son, Shane, was born with Congenital Diaphragmatic Hernia (CDH). CDH is a birth defect that occurs when the diaphragm does not fully form allowing the abdominal organs to enter into the chest cavity, preventing the lungs from growing. I had an ultrasound at 8 weeks and then another at 8 and a half months. The ultrasound was performed, and they said everything was OK but wouldn't give us any pictures until they gave in to my begging a few weeks later- only to give a picture of Shane's backside. An ultrasound at 8 months gestation on a baby who had virtually no left diaphragm, the majority of his abdominal organs in his chest, 2 heart murmurs, and a displaced heart, and they claimed they saw nothing.

When we requested Shane's medical records a few years later, there it was in black and white on the technician's note- "Stomach missing." They knew something was wrong and never told us, never did more testing, never referred us to a specialist. If we had known, had time to research, we never would have allowed Shane to be treated at the facility that he was transferred to after birth, a hospital with an extremely low CDH survival rate. If we had known, Shane wouldn't have been subjected to the trauma of a transfer and wouldn't have been delivered at a hospital that didn't even have a pediatrician in the building because it was after 5:00 p.m and he wouldn't have suffered many severe complications. Shane died in 1999 at age 6 and a half as a result of these complications. They had no right to withold information that could have saved my son's life.